Is it worth it to fly to see Dr. Grubb?

[twobyfour99]

Hey there!

A couple months ago my cardiologist made me an appt. with Dr. Grubb. Believe it or not, he was booked until Oct. 12th. So I have an appt. with him, but am concerned about the expenses of the trip and not getting out of it what I am desiring.

I live in Northern Va. so I would have to pay for plane fare, hotel accomedations, and food. Probably also rent a car to be able to get to the appt.

I just wanted to know from people whether or not it is worth it. Is it just a 15 min. appt. where he is going to tell me things that I have already heard? Or does he think of things that no other dr.s think of?

I have been suggested another dr. by one of the ladies on this site that lives in my area and she has had different tx that I have been asking my dr. for and he simply doesn't listen.

I am just so torn on what to do. Don't want to give up my spot until I'm positive, but I am not in the best of financial situations right now and I read of someone whom it costed them 3000 in expenses to go see him.

Yeah, can't do that!

Any responses would be appreciated.

Frances

[MightyMouse]

The appointment will last at least an hour. I'm not sure how much they charge now for a new patient appointment--several years ago, mine was about 175$ (which was a BARGAIN compared to my local cardio's charges). 3000 to go to Ohio is outrageous--unless they're coming from another continent, it shouldn't cost that much.

We drove from NJ--took us 9 hours. You can get a discount at the Hilton on the MCO campus, if you tell the your a patient, they'll give you a cheaper rate. Also, if you drive, you can take nonperishable food with you to keep the costs down.

It would be tough to find another doc with as much info on dysautonomia--however, if you're already getting good treatment, then maybe you can stay closer to home. We made the trip because the meds I was using at that time weren't helping me.

Nina

[VJWeaver]

Frances,

I myself think it would be worth it. I see him but I live in Ohio so it is a lot closer. My first appt. with him was 4 1/2 hous long and he does explain in detail of what we have. If you are already know alot about these disoders then it is if you want to.

I have heard people on different support groups say that it was worth and some say it wasn't because they knew the stuff he was talking about (such as serotonin levels, he draws a picture of the head and points out where we malfunction at, etc.

I always say that it is nice if you see him atleast once and get all the information that he has to give.

Also if you do decide to keep your appt. email me at VJWeaver32@earthlink.net if you want to. There is a Hilton right there on the campus of MCO. When you call them up directly and tell them that you are going to see Grubb they will give you a good disount on the room. This was it would save you on a rental car. It is a walk to his office but the do have an underground tunnel that will take you there without going outside.

I did want to let you know if you don't know for sure if you want to keep it you should wait until it gets a little bit closer to the date. Once you cancel foget it trying to get it back...LOL....

Hopes this helps you.

Good Luck to you,

Vickie

[twobyfour99]

Thank you so much!

Just knowing that it isn't a standard amount of time for a dr.s appt. makes me want to keep the appt. more.

Do you guys know if insurance covers it at all? I have mamsi optimum choice preferred.

I don't feel like I have enough knowledge of this for someone who suffers with it on a daily basis. So far, my care here has not been satisfying for me at all.

The 3000 trip that I was talking about did come from someone who was from Canada so maybe that's why it was so expensive.

The meds. they have tried on me haven't worked so far. I have been on midrodine and couldn't handle the side effects of it. I tried adderall and it worked, but prevented me from sleeping and gave me a migraine when it started to wear off. Florinef didn't seem to make a difference at all either. All the meds. just seem to make a difference in my financial situation versus my health.

So who knows? Maybe it is worth it to go see him. Knowing that I could walk there helps too.

What part of N.J. did you come from mighty mouse? My sister lives in Southern N.J. in a little town called pitman and that is about 2 1/2 hours away from my house depending on traffic.

Thanks again guys!

Frances

[KarenLorrel]

Yes, it is worth it. Be prepared to be there a long time. My first appointment was 4 hours long. The second appt I had to wait 3 hours to see him but it is worth it.

But, there may be someone closer. If not, Dr. Grubb is worth the time and money.

[MightyMouse]

Hi again,

I know where Pitman is...I've even been there It's about 30 or 40 minutes south of me. We drove straight out the PA turnpike to the Ohio Turnpike. We've also done the PA turnpike extension north to route 80 west, which can be a little faster.

Call to ask MCO's billing office if they take your insurance. Mine was partly covered...I think I ended up paying about 50$ after all was said and done.

Nina

[twobyfour99]

50$ to have someone truly know and understand would be well worth it!

Being there for a long time wouldn't bother me either b/c i have TONS of questions to ask him!!!

Frances

[Ernie]

Hi,

I am the one who paid 3,000$ to see Dr Grubb. There was an extra 1,000$ because I fainted at the bookstore (I was rushed to the ER by his order) while buying his book "Syncope"!!!!!!!!!

When I went 2 years ago it was worth every penny I paid because he is the first who diagnosed me and confirmed that I did not have psychogenic syncope. He is also the first who prescribed me a medication that worked and that turned my life around. At that time I still had the hope to return to work and I took my last savings to see him.

Now I know I am disabled for the rest of my life and my government does not want to pay for him and I can't afford to pay myself. I would go anytime if I had the money. Every 6 months I keep postponing the appointment hoping that the next time I will have the money but so far I can't still afford it.

So, in conclusion, I would go back if I could afford it and I am frustrated that I cannot get the medical help I need in Canada.

Ernie

[DLD]

There is a wonderful cardiologist in Northern Virginia that specializes in dysautonomia and would also be worth your effort. I am sure he could see you before October. His name is: Dr. Hasan Abdullah (1-866-645-4055). We see him and Dr. Grubb. It is always a good idea to have a local doctor. Personally, I love them both and find two qualified opinions a wonderful luxury.

[Guest Julia59]

Wow Vickie,

I did not know there was a tunnel from the Hilton to MCO---and I live only a mile away! LOL

Frances, when is your appointment---Is it OCT? Since I live so close, i'll be glad to help you in any way you need it. Dr. Grubb is a wonderful doctor, but he does have many, many patients, so at times he does get interruptions. He does spend a lot of time with his patients. And like Vickie said, he educates his patients about the ANS.

He has been known to mail research literature along with some of his poems to his patients when he has the time---or remembers.

I remember when he diagnosed my POTS---I thought he was nuts! I was so used to being dismissed by so many doctors-----I really thought it was to good to be true to have an actual diagnosis.

I'll be going to New York on July 19th to get a second opinion regarding my chiari and congenital cervical stenosis---and if it relates to my POTS. I already had one surgery in Chicago on tow herniated disks---that combined with my stenosis that I was born with left me no choice to have surgery. The trips to Chicago were not that expensive. They ran around $500.00 bucks for two day's if we stayed in a nice hotels. We drove---which is only about 4 1/2 hours from Toledo.

New York is a 9 hour drive---just like Nina's from NJ to Toledo. I'll be going her way this time---LOL The Chiari Institute in Long Island.

Julie :0)

[twobyfour99]

Your responses have been wonderful! Changed my opinion about going totally!

Yes, my appt. is Oct. 12th at 1:00 p.m. with Dr. Grubb. When I scheduled it, the appt. was over 8 months away. I thought it was crazy to have to wait that long, but I guess if he knows what he's talking about, I understand why.

Maybe we could get together while I'm out there.

Frances

[briarrose]

Frances

I was diagnosed with POTS 1 1/2 years ago. I have had tachycardia problems since 11/01. I have struggled with severe joint pain for well over a decade, among some other symptoms. The joint pain alone will put me in bed for weeks because it's too painful to get up and around. Feb 03 I was ready to quit my job because the tachycardia was too much and I was exhausted all the time.

I have seen numerous internal medicine, rheumatologists, endocronologists, cardiologists to try and help me with some of my symptoms. I even traveled to New York to see a rheumatologist to help with my joint pain. She wasn't any help, just cost me a lot of money.

I saw Dr. Grubb Last August for the first time. I travel from Oregon to Ohio to see him. I will continue to do so. One visit with Dr. Grubb and he did in one visit what I've spent 13-14 years trying to get, help with my joint pain. He was able to get most of my POTS symptoms manageable. I'm still able to work, I do continue to have problems and fatigue but we're working on it. I think it's harder to manage some of my problems because my symptoms are forever changing. I now struggle with very low blood pressure which wasn't an issue in the beginning.

I know it's not completely up to Dr. Grubb. He gives my doctors here a game plan and they try to manage it every six months until I see him again. His nurse has been wonderful in the clinic, most times that I've called. (HINT - you need to ask for one of them that knows about POTS, they will gladly pass of the phone .)

I know that some people haven't been as successful but it was 100% worth it for me to see him. I needed a game plan as well as the validation and not many people realize this, but there aren't any knowledgable trained doctors anywhere on the West Coast in this illness. I have recently heard of some doctors in California that have POTS patients, but my doctor here can claim that too. I don't think any of them received formal training on this syndrome. It's important to have a knowledge base other than MD behind your name.

I'm not 100% positive but I would bet that Dr. Grubb sees more POTS patients than anyone else in the world, seriously. I think he's dedicated his life to us.

steph